Thanks to this website address, thousands of individuals have found information, support
services and assistance they need about a condition that affects approximately 40,000 babies each year in the United States alone.
Congenital Heart Disease is considered to be the most common birth defect worldwide, and is the leading cause of birth defect related deaths. Despite these statistics, there have been few organized international resources dedicated to meeting the needs of the families and individuals affected by CHD.
The Congenital Heart Information Network, a 501(c)3 organization created by the mother of a child with complex heart defects, provides reliable information, support services and resources to families of children with congenital defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them.
Additional services include financial
assistance to families in crisis, funding for local
affiliated support groups, and
sponsorship of an international CHD Awareness
Campaign. With the guidance of a medical Advisory Panel, we maintain a commitment to providing resources that are
accurate and reliable.
When we first went online in November,1996, I never could have imagined that our volunteers could reach so many people. But perhaps the most rewarding aspect of this experience has been the development of close personal relationships among
our members and site visitors. Meeting in small groups throughout the globe, so many "online" friends are reaching out to one another, not only through the Internet, but also by meeting each other in person, joining local support groups and starting new ones, writing books, organizing events, and helping to promote awareness of CHD.
Our story reflects the courage, compassion, and commitment of one international community of "online" families and dedicated medical professionals, who have maximized the interactive capabilities of the Internet to educate, inform, and connect people with one another in a very positive way.
There is no formal funding as yet for the Congenital Heart Information Network, and we rely on
membership, voluntary donations and unrestricted educational grants to cover our costs.
What you see within these pages represents the next step in our continuing
effort to provide much needed services to members, site visitors, other
organizations and local support groups. It is my sincere hope that by working together, we can
continue to grow and evolve to meet the ever growing needs of the people we
I look forward to hearing your ideas, comments, and suggestions, and I am excited by the possibilities!
Congenital Heart Information Network